Thursday, October 18, 2007

Day +141

We got the official word on what's going on a few minutes ago. I have PTLD, which is a pre-cursor of lymphoma. The doctors keep emphasizing that this is not cancer and is only a complication. My leukemia has not reactivated, but I will be getting a bone marrow biopsy tomorrow to see what's going on with my graft. They just want to be sure that the PTLD hasn't infiltrated my graft.

The results from my CT scan showed that my abdomen is littered with lymphnodes growing tumors. This is par for the course with PTLD. This is also the reason that I've had extreme nausea and diarrhea. I'm not absorbing nutrients like I should. My attending physician has decided to cancel the surgery scheduled for me for tomorrow. The head and neck guys were going to go in and get a big chunk of the tumor growing in my sinus cavity. Here I thought it was just a giant plug of snot. Silly me.

I received my first dose of Rituxan yesterday. It's side effects are similar to that of rabbit ATG. I got severe chills and they had to put something in my mouth so I wouldn't bite my tongue off. It was pretty bad. I had a fever all night in addition to the chills. The nurses have reassured me that the next dose will be easier to tolerate. I'll get one dose a week for a total of four weeks. This is preliminary based on how well the tumors react to the drug.

The test for EBV came back positive, which is how all of this started. The Epstein Barr virus infiltrated my defenses and just started wrecking the place. This is the same virus that can be responsible for mono in healthy people. I don't know where I picked it up from, but I do know that the cat's are off the hook. My doctor ran a test for cat scratch fever. I know she had to, but I still would have felt horrible if one of the kids gave this to me. The test for that came back negative.

The attending physician did remark that the node on the side of my neck and jaw seemed to have shrunk and I can confirm this. I'm experience significant sinus drainage and the speculation is that the tumor in my sinus cavity is starting to shrink and that's what's draining. It's so yummy to be me.

I will admit to being a little irritated at having "beaten" one cancer only to fall face first into the world's biggest pile of dog pooh. Don't get me wrong, I'm not having a pity party, or a "why me?" moment. I was just hoping for a little bit of a break and a chance to get my life back on track. It looks like I'll be in the hospital for a total of five weeks this time around. Feel free to email and post lots of comments. I only packed one book and it is horrible. I seriously thought that I would be getting out of here within a week. Silly me.

On the knitting front, things couldn't be worse. You really shouldn't knit something intricate when you know that you'll have interruptions every few minutes. The lace stole I'm knitting looks more like those sad little pot holders we all made during arts and crafts for mother's day. I'm still following through with it and by gosh, I'm going to wear it. Probably inside, with the curtains drawn and the lights turned down really low. But I'll still wear it. I've decided that when I get out, I'm finally going to try to knit a sweater. God help me. I'll have to seriously concentrate on that one. Knowing me, I'll choose the most intricate design that I can find, cavalierly ignoring the "expert" rating on the pattern in favor of my high intellect and over abundance of confidence. How do people put up with me?

It's almost noon and I'm still in my jammies. I'm waiting for a nurse to come in and wrap my arm up so I can take a shower. No telling when this will happen. The poor nurses are so over worked, I hate to bother them for something so trivial. I did get the PICC line in my arm and it did suck. The bright side is that they can get blood draws from it, so no more needle sticks. Or, rather, I should say fewer needle sticks.

Chris is being amazing throughout all of this. I know he's scared spitless and I wish that I could make things better. He's busy putting together things to keep me entertained and out of trouble. That's all I have for now. If I hear of anything else, I'll pass it along.


carilou said...

Why couldn't it be the good ole fashion' kind of mono? The kind you get from too much kissing?!

This all sounds incredibly uncomfortable. Snot and poo and chills and needles...

I am trying to envision you lounging on a warm beach somewhere sipping a margarita and knitting a cashmere cable knit jumpsuit with zillions of pockets and a stack of unread books next to you.

Doesn't that sound nice?

Susan Carrier said...

Ann, Do you know about the rubber sleeves that cover PICC lines? I struggled with wrapping my PICC before showers and always did a lousy job. This rubber sleeve gave me so much independence. You slip it on over your arm and pump the air out. It takes about 10 seconds for the whole procedure. You can even go swimming with it.

I now have a catheter (in prep. for my auto stem cell transplant) and no longer need this. I was going to find someone to pass it on to at City of Hope, but would love to send it your way. Let me know and I'll pop it in the mail to you.


Anonymous said...


I am so sorry to hear about this bump in the road. EBV sucks!! I am dealing with a sucky case of the mono right now... You're so strong and I know you will kick this new stuff's ass too! Keep on keeping on! I am sending good vibes your way!